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Midori

Can POTS tachycardia be intermittent? I.e not every time you stand?

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So sometimes when I go from lying to standing there is a big difference. Like this morning my pulse went from 70 to 120 and then settled at 100 or 110 for the next ten minutes.

 

Other times there is zero difference.  I don’t know why.

 

I am 36 and have had symptoms of POTS i believe for last 15 years.   I have only come to this suspicion recently and wanted to ask a few questions before I go to my doctor next week.  My other major symptoms are, brain fog, weakness, lightheadedness, fatigue, IBS, sometimes always feeling very hot.  I have been told that I have anxiety which has never sat right with me. I was not shy at all growing up.  This feeling came on suddenly in college and has come on and off for decades and I’ve been searching for answers since then.  The symptoms always feel better when sitting and go away when lying down.  I gave up caffeine because years ago it made the situation much worse. Vitamin D helped immensely as well.  It used to be debilitating the symptoms.  
 
I recently bought a blood pressure cuff and a little one lead ECG.  This morning my readings went like this:
 
(I hadn’t gotten out of bed yet, just woken up)
 
9:17am
100/64
Pulse: 71
 
I stood up
 
Pulse shot up to 121 and was still there a few minutes later
 
By 9:21 my pulse had settled down to 104 or 100 but bouncing around a bit.
 
 
9:28 
 
121/72
my pulse was still at 105.
 
 
I often feel dizzy after using the restroom. Today I measured it (slight TMI I know)
 
I used restroom.  Sitting:
110/77
Pulse 96
 
Immedietly upon standing:
117/83
Pulse 128
 
My questions are:
My major question though is this. Sometimes I take it from sitting to standing and no difference. Other times it shoots up.  Can POTS be intermitent? Or is it more of a constant?
 
Also, does this sound like POTS from the symptoms I have?

 

Thank you in advance for any insight you guys can provide!

Edited by Midori
Wanted to supply more information

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Only a medical professional can diagnose you but the people on the forum can help with experiential advice. There are multiple dysautonomia, POTS is not the only one. 

My cardiologist is always telling me to find balance. That's because my symptoms swing far and wide. Sometimes I am great and sometimes I am not. It's all about learning that there will be no consistency with symptoms and that I have to be prepared either way. Celebrate the good days, stay hydrated and increase your electrolytes on bad ones. 

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Thank you so much for your reply. Yes, I’m just looking for experiential advice.  That is interesting to know there are good and bad days. 

 

For me it seems to be good/ bad but even throughout the same day.  Last week I measured it and it was abnormal early in the day and normal later when I compared lying down/sitting and standing again.  Anyone else experience this?

 

Thanks so much!

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49 minutes ago, Midori said:

Thank you so much for your reply. Yes, I’m just looking for experiential advice.  That is interesting to know there are good and bad days. 

 

For me it seems to be good/ bad but even throughout the same day.  Last week I measured it and it was abnormal early in the day and normal later when I compared lying down/sitting and standing again.  Anyone else experience this?

 

Thanks so much!

That's how it goes with me. One moment fine and the next not so much, and I never get a warning. I am getting better at 'being used to' such rapid differences in symptoms--it takes time but I am now at a better place in my head than I was a year ago. You are going to get through this, you will. 

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@Midori - yes, for me it is intermittent. Even before I was medicated for my POTS symptoms - I did not always have the tachycardia and symptoms upon standing. Some days ( although rare ) I would have symptom-free days. Then it got to the point where it got more frequent. Today - since I am on medications - I am much more controlled as long as I live within my limits. So - in my experience the POTS symptoms and tachycardia upon standing can come and go. 

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Thank you for your responses.  That is very interesting to know.

 

Just now I measured myself, sitting to standing is back to normal!

 

But an hour before I measured myself from crouching to standing position and it was wild

 

While crouching I was 65. when I’d stand it would shoot up to 120 or 130.

I’d return to crouching and same thing: 65 or 70

Back up to standing was 120-130 again.

I felt like I would pass out and stopped.

 

I’m afraid that when I go to get tested it will be a “normal” time.  

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I would not be afraid of a normal test result. Most dysautonomia patients fail some tests. It is the nature of the beast and - unfortunately - there is no such thing as " yes, you tested positive " or "no - you definitely do not have it". Many patients  - including myself - had both - normal and abnormal testing. That shows you why it is so difficult for physicians to pinpoint this illness - it does not follow patterns in everyone. The most important thing for both patients and physicians is to remember: numbers are only that: numbers. Symptoms are real and indicate a problem that shows your body has a problem with those numbers. Our bodies can adjust and compensate - which will alter our numbers - but we go on without severe symptoms. 

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I am having similar symptoms for some time. I haven't been diagnosed with dysautonomia nor pots yet. I'm having a difficult time finding a doctor in Austin Texas that even knows of it. My doctors and cardiologist have blamed it on "anxiety" for a long time. I do have panic disorder and controlled AFIB with Multaq and Bystolic drug. And I do have anxiety at times but this heart rate issue disturbs me. 

Just the last few days, my resting heart rate was always around 80 and never went below until I went to sleep. When I would stand up, it shot up to 110+. Before I was on those drugs, I'd have times where it would shoot up to 130+ and cause extreme anxiety and night sweats in my sleep which caused my afib. I still get night sweats for no reasons. 

Today, my resting HR is normal again in 50-60's and when I stand up it only goes to the 80's if that. 

This is really frustrating. A local neurologist here in Austin Texas doesn't know anything about dysautonomia and referred me to someone in Houston. It is frustrating I would have to travel just to see a doctor to test for this condition. 

 

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Wow this sounds like me.  My whole life I’ve been very healthy worked out 4-5 x a week including hiking, kickboxing, running and I ate very well never had digestive issues. My symtoms literally stated in March of 2017. I was sitting and went into sinus tachycardia. When my heart rate eventually went to 178 I ended up in the ER that night. They didn’t find anything and the MD said it could have been a viral effect since I had been fighting a viral cold/ sinus congestion for three weeks. I didn’t think anything of it and went on with life. But little did I know this was the beginning of Many symptoms to come. After this episode, I started experiencing waking up at night hot, sweating, heart racing. Then I had an extreme episode on a plane in air where I was sleeping and woke up feeling very hot, i ending up passing out and urinated on myself in the process. When i regained consciousness I was surrounded by my family and the airplane staff. I was very dizzy , lightheaded and had palpitations the rest of the flight. I decided to get a full check up after this episode. CT scans, MRI, 21 day heart monitor, heart echo, and extensive blood work and all they could say is that I was having heart palpitations but they were not dangerous. My symtoms would come and go in patterns. I’d be fine for a while, I’d get encouraged and start working out again and then boom!, another episode of heart palps leading me to urgent care. The bizzare thing is that I’ve noticed that every time I feel lightheaded or hot, I notice I almost always have to release gas or have bowel movement. Everyone I would mention this to the doctors they would just look at me confused. Then the GI symtoms started, indigestion, nausea, diarrhea, urgency for bowel and urine, low back pain. Sometimes accompanied with feeling hot, lightheaded and having heart palps. So my GI work ups started with endoscopy, stool tests, blood tests. MD officially diagnosed me with IBS. I’m also scheduled for colonoscopy, but I think my MD is doing this for my peace of mind.  Last week was the worse, waking up in middle of night feeling hot then heart rate going to 160.  Sometimes it happens upon waking up, feeling lightheaded, warm, racing heart. Then heart rate remains 120-130. Some mornings I have to spend in bed until these feelings go away.  My resting heart rate can range from 56-78.  But like you, it’s intermittent. They have also tested me for neuroendocrine issues, all normal. I’ve gone to my obgyn to rule out uterine and ovarian issues and all normal. I’ve been to a functional med doctor who found my ferritin and vitamin D levels to be low. Now on supplements but no difference yet. I’ve been gluten, soy and dairy free for  three weeks with some only minor improvements in my G.I. symptoms but I’m still not pooping three times a day accompanied with feeling of feeling faint. I hate my life. I was I could be 39 for ever lol.  Have any of you had GI symptoms with POTs? I’m not officially diagnosed yet, but a lot of people and doctors have suggested the possibility. Next step is referal to a renowned autonomic disorders clinic here in my area. 

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GI symptoms are common with dysautonomia.  Tachycardia and other symptoms wax and wane - part of the reason it is hard to get diagnosed.  It can be helpful to keep a log of your HR and BP at various times in the day  when you are starting out.  And many of us had a sudden onset just as Pippe describes.

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I used to have a HR all the way up to 180 before I started on meds. I have pic's of those days. My HE would flux so much that it was hard to get an accurate BP reading. Now I still flux to like 115 sometimes and occasionally when my meds do not work I can go up to 145 when working and get dizzy. But that is only once a month these days. I don't push things though. I work at a very slow and controlled pace, so who knows what would happen if I tried to exercise. Last night my HR was going up 40 points for five minutes, then went down 20 points, then went back to normal and had no changes from sitting to standing all in the same 10 minutes. This POTS is a very strange thing sometimes. 

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Yes. Usually big changes in heart rate in the morning (until I take my beta-blocker, re-hydrate and get moving around). Pretty stable throughout the day - sometimes only a 20 or 30  beat increase from sitting to standing, then it can go either way during the evenings. Sometimes I'm fine, sometimes just standing at the kitchen counter talking to my husband has my HR at 160. If it doesn't settle after 20 or 30 minutes of sitting, I may take another BB dose.

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